Will saw his regular pulmonary today. Things are okay, but not great. Will's lung function numbers are a little better than they were when we was in the hospital but still not rebounded to back to his previous baseline. Actually, they're still down around where they were at the beginning of the year, although they've been up and down since then. His basic lung function is about 40% of what is predicted for someone of his age, weight and height. Not great. He doesn't feel great either, partially that's the medications, and partially that's because he gets short of breath easily, tires easily, etc. His saturation is generally still at 90 or 91% on room air, but his heart rate has been pretty normal, so that's good. Higher saturation would help a lot and I guess if this continues we'll be faced with home oxygen sooner than anyone wants.
We also found out today that Will is neutropenic, which means that a part of the white blood cell part of his blood system has been wiped out. This is a side effect of the valganciclovir and one reason why we are so hesitant to opt for treatment of CMV unless the docs feel pretty sure it is an active infection. So Will is getting GCSF shots to promote white blood cell production. He had these when he was on chemotherapy a few years ago. They're not great, but in the past at least, they have worked for him. (Will doesn't have cancer now, and a recurrence is not suspected. He doesn't have any of the symptoms that have usually come along with his past cancers. He does have a regular recheck with his oncologist on Thursday, so we'll know for sure then.)
The plan is that Will will be seen again in two weeks. He is to go off the ceftaz as scheduled, which should mean the last dose will be Wednesday; but maintain the picc line for at least two weeks, just in case. He'll stay on the valganciclovir and the voriconazole, although the hope is that he'll be able to go off at least the voriconazole and maybe both at his two week recheck. He is to try to stay hydrated (his kidney function is down, again) and try to eat a little more and get some regular activity. Today he took the dog for a walk, which is good. It's really hard.
1 comment:
sweet Elizabeth- Happy birthday to WIll, and hope that the news that unfolds these next few weeks is all good and includes better white cell reports and Will feeling better in ways that count to him-- so sorry for the ongoing issues, and hope that he gets the all clear on thursday from the oncologist. It would be great to have one LESS thing to worry about.
The car and train set look so cool! he will love those for a long while. I love wooden toys, and have a big wooden milk truck waiting for little hands someday. Or kate's hands. They count too.
And you-- your writing is so lovely, your description of the summer sky was magical.
Have one little cherry tomato for me. I tried veggies here last year and it was a disaster, too woodsy, but the herbs are nearly prehistoric in scale.
Thyme is such a mischievous herb, it looks so innocent but I swear it grows at night like bad dreams and leg hair.
Have a wonderful evening,
sending love,
Kate
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